A blog about living with autism, Tourette syndromme, OCD, learning difficulties and Ehlers Danlos syndrome

What I want is a 16 bedroom mansion in Surrey with a jacuzzi, steam room, a room full of games consoles, a chauffeur called Parker and outdoor stables containing 20+ polo ponies…

I am of course joking.

However, the way “professionals” look at me when I say what I really want, I often feel as if I have asked for something so ridiculous like the example above, that it will never, ever be possible! So instead I will tell you what I need.

What I need is a place I can call home. A place where I do not feel too frightened to even step outside of my front door. What I need is people around me who understand my disabilities and do not criticise me for things I cannot control. I need a place where I can stim, jump, squeal and pace without annoying the neighbours. I need a place where I will have support around 24/7 (not 1:1) so if I have a mental health crisis out of hours, someone is there for me. I need a home that is away from the ‘normal’ people who continuously hurt me just for who I am.

I want to feel safe.

I need security. I need to know that wherever I move next, I will not be forced out suddenly due to funding cuts. I need to have a stable support network. At the moment, I am at the mercy of our local council. If they decide I no longer need (translation: they can no longer afford) 5 hours of care a day, they have the power to reduce it. Having agoraphobia means I only go out when I am with others and losing my hours would render me housebound. I need to live somewhere that a landlord cannot decide to boot me out so they can sell the property. I need something designed for a person like myself. That isn’t necessarily what other people like me need. I am unique, as are all people with autism and so are our needs.

One need that is never taken into account when I am housed is my misophonia. It is a condition which literally means ‘hatred of sound’ but would be better described as ‘sound rage’. My main trigger is bass music. This makes finding suitable accommodation even harder. Wherever I move, I would need my room to be soundproofed. This is a fairly cheap thing to do (I would be willing to pay for it with my benefits as they are there to pay for disability adaptions) but again so many people laugh at me when I suggest it. My misophonia is not a psychological condition and is currently not treatable, so I will most likely have it for life.

I found a place. It is in Milton Keynes, where I am from originally and is quite close to my Mum and Step-Dad’s house. You get your own flat set in an acre of land with optional communal areas if you choose to mingle. Each room is soundproofed and designed to be autism friendly. Each room has individual heating rather than one shared thermostat and best of all the owners have not only said I am very welcome there but my pet rabbit, hamster and elderly goldfish are also very welcome. This place opened on the 1st November this year. There are staff on site 24/7 and you can have as little or as much independence as you want or need. It’s almost perfect (nothing is perfect…) except for one thing. It is classed as a residential home, not supported living.

I have made my decision. I want to move there. I need to move there. It is my right to live wherever I want, but alas it is not that simple. I will have to be assessed by my non-existent social worker who is no doubt under heaps of pressure to turn down residential placements by their council. As I mentioned in my previous blog post, it was never my decision to leave residential. My needs are complex and I need to live somewhere where these needs are understood and can be accommodated without a ride in the back of a police car because I had a meltdown out in public or a visit to the hospital because my neighbours are making so much non-stop noise that I have a meltdown and get taken there by support workers who are not trained in my conditions. This home is run by people who know autism, understand autism. They listened to everything I and my Mum told them and agreed that supported living is NOT suitable for someone with my level of needs. My Mum wants me to go to this house so she knows that I will be safe. My Dad wants me to go to this house so he knows I will be safe. I want to go to this house so I know I will be safe.

My current care company don’t want me to go to this house.

The council don’t want me to go to this house.

They don’t care if I am safe.

I’ve lost my voice again.

Advertisements

Share this:

Like this:

LikeLoading...

Published by autisticgamergirl

I am 30 years old and I am autistic and have Tourette syndrome, OCD, Ehlers Danlos syndrome and learning difficulties. I also have severe anxiety issues which have led to me having physically converted symptoms. I live in the United Kingdom.
View all posts by autisticgamergirl

2 thoughts on “There’s no place like home… unless you are autistic, part 2”

I hear you. I totally understand the constant fear of losing your supports, of being kicked out of your housing, etc. I need security too but, the fact being that autism (ie. a “psychiatric” condition) is judged to be my primary disability, means I cannot get care under the Long-Term Care Act (Netherlands), which would give me care for essentially the rest of my life. Instead, I’m at the mercy of the local council too, which means I need a new fudning decision made every six months or so. So far, my social consultant (local council person) has been really good, but I constantly fear losing my supports anyway.